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Original article
Perspectives of adolescents on decision making about participation in a biobank study: a pilot study
  1. Petronella Grootens-Wiegers1,2,
  2. Eline G Visser3,
  3. Annemarie M C van Rossum3,
  4. Claudia N van Waardhuizen4,5,6,
  5. Saskia N de Wildt7,8,
  6. Boudewijn Sweep1,
  7. Jos M van den Broek1,
  8. Martine C de Vries9
  1. 1 Department of Science Communication and Society, Leiden University, Leiden, The Netherlands
  2. 2 Committee of Medical Ethics, Leiden University Medical Center, Leiden, The Netherlands
  3. 3 Department of Pediatrics, Division of Infectious Diseases and Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands
  4. 4 Theme Sophia, Sector Research Office-Theme Sophia Biobank, Erasmus MC University Medical Center, Rotterdam, The Netherlands
  5. 5 Department of Epidemiology, Erasmus MC University Medical Center, Rotterdam, The Netherlands
  6. 6 Department of Radiology, Erasmus MC University Medical Center, Rotterdam, The Netherlands
  7. 7 Intensive Care and Department of Pediatric Surgery, Erasmus MC University Medical Center, Leiden, The Netherlands
  8. 8 Department of Pharmacology and Toxicology, Radboud University, Nijmegen, The Netherlands
  9. 9 Departments of Pediatrics and Ethics and Health Law, Leiden University Medical Center, Nijmegen, The Netherlands
  1. Correspondence to Dr Petronella Grootens-Wiegers; p.grootens{at}lumc.nl

Abstract

Objectives To be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool.

Methods The perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing.

Results All adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material.

Conclusions Adolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents’ perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices.

Implications Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.

  • patient perspective
  • ethics
  • qualitative research

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors PGW designed the concept of this research and conducted the research, drafted the manuscript and contributed to critical revisions, and shares the accountability for this manuscript. EGV, AMCvR, CNvW and SNdW were involved in the essential design stages of this research and contributed to critical revisions, and approved and share the accountability for this manuscript. BS conducted the research and contributed to critical revisions, and approved and shares the accountability for this manuscript. JMvdB acted as a supervisor of the research and was involved in the draft concept and revisions of the manuscript, and approved and shares the accountability for this manuscript. MCdV acted as a supervisor on the research, helped design the project, provided extensive feedback on the line of reasoning of the draft versions, and approved and shares the accountability for this manuscript.

  • Funding This work was supported by The Netherlands Organisation for Health Research and Development (Project No. 113203016).

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval Medical Ethics Committee of Erasmus University Medical Center.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data available.

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